Saturday, January 21, 2012

The ABC's of vitamins for RA

It isn't quite as simple as taking vitamin AB or C but I will divulge what vitamins and herbs I am currently taking, which other ones I have tried and what I am exploring as my next options.

As with all health issues, you should always consult with your doctor should you decide to start any over the counter medicine, vitamin or herb for any chronic condition. Many people wrongly assume that vitamins can't harm you or that an herb, since it is derived from nature, is only good for you. True, most of the vitamins and herbs I have tried and continue to take have improved my ra symptoms to some extent but if taken with the wrong medication or if one takes too many of get were I am going here. Even vitamins and herbs can cause us problems unless we keep a sensible approach to it all.

Back in 1998 when I was officially diagnosed with ra, I adamantly refused to take any medication unless it was "natural".  I will confess that the pain won out in short order and I was taking some heavy duty man made prescriptions but I was also taking several other "natural" treatments proclaimed to fix ra.

First on my trial list was shark cartilage. Yes, you read right, shark cartilage.  For me it didn't do a darned thing but I was at that time in a very bad way with my ra.

Shark Cartilage, according to web md "has been used for cancer. However, this product has not been found to be effective when used for cancer. If you have cancer or think you may have cancer, consult your doctor immediately for more details and for proper treatment of your condition. Using this product alone without proper medical care for your condition may cause serious (possibly fatal) health problems. This product has also been used for arthritis and psoriasis. This product is not recommended for use in children." 

Next on my natural quest to conquer my then ragging ra was something my husband heard about on a radio advertisement while driving to work one day. I can't recollect the exact name of this professed cure for everything but I do know that it was very expensive and it DID NOT work at all. It was made from seaweed or something like that and was to be taken daily. It failed miserably and I am ashamed to say that yes, I was taken by the snake oil salesman.

For years after that, I pretty much ignored the holistic approach to ra all together. I did do some physical therapy, pool exercises and wore splints but I obeyed my doctors orders to the T.  I took so many prescriptions that it was difficult at times to figure out what was working and what might not be working. Then it all imploded. I became allergic to almost every single medication I was taking except Enbrel. I think my body just rebelled and said I can't process this stuff anymore. 

Fast forward about 12 years and this brings me to a more current day story. Since developing these life threatening allergies I was left with very little to treat my ra. Today I am still taking what very few medications I am not allergic to. These include pregnisone, tramadol, and thyroid medication. And that is it for the prescription types.

I felt that there must be more I could do to help my body heal itself and so my quest to discover what might work for me began. As with most things, I first turned to the internet for help. Once I narrowed down the list of vitamins and/or herbs I was willing to try and which I felt might help ra, I brought the list to my NJ doctor to review. She didn't have a problem with any on the list I presented.

So today I am taking:
Vit D3 which was added about 8 months ago by my endocrinologist (I was lacking it) 
Calcium, magnesium and zinc which I was instructed to take due to taking pregnisone which can lead to thinning bones or osteoporosis
Primrose which I added about 6 months ago
Flaxseed Oil which was also added recently
Fish Oil
Collagen Type 2
Turmeric (which I had to stop taking as I am allergic to it)

Interestingly John Hopkins reports "The most commonly observed vitamin and mineral deficiencies in patients with RA, are folic acid, vitamin C, vitamin D, vitamin B6, vitamin B12, vitamin E, folic acid, calcium, magnesium, zinc and selenium. Although, food is always the preferred source for vitamins and minerals, it may be essential to use supplementation to assist in counterbalancing the outlined deficiencies and improving nutritional status for patients with RA. Increased intake of antioxidants such as selenium and vitamin E may decrease free-radical damage to joint linings, which diminish swelling and pain. However, to date, there have been no human clinical trials that convincingly prove or disprove the efficacy of antioxidant use. Supplementation of calcium and vitamin D is also recommended to decrease the risk of osteoporosis that results from nutritional loss of these supplements, from menopause and from concurrent steroid therapy."

I have yet to explore the other vitamins listed above as a possible option to add to my current regimen.  First, my current insurance does not cover vitamins and second, this can get to be expensive. And did you know that currently we can not include a non prescription vitamin as part of our health care costs for taxes? Perhaps one day this will change and we will be able to deduct some of the alternate types of treatments available for both ra and chronic pain that have been approved by a doctor. I can dream can't I?

Interestingly, I have been thinking about adding a protein powder to the mix as after reviewing my daily intake of protein, I am far below the suggested amount.  I am beginning to believe that my recent problems with increased tendon and muscle issues might be exasperated by my lack of protein.  But as with all things, only time will tell if adding this will help at all.

Are you currently taking any vitamins and/or herbs that you believe have improved the symptoms of your ra or chronic illness? Have you gotten a doctors review and what has been your doctor's reception to your suggestions of adding "natural" remedies?


Christine said...

I use both western medicine (i.e. rheum and man made meds) as well as eastern and naturopathic meds. Like you, I have gone back and forth between the two. It is very difficult to do both because my Chinese medicine practitioner and rheum. are both supportive of my choices but there is such a wide conflict in their approaches to healing. Right now, I use what i think is best of both with their input.

In regards to supplements and such, I was found (I have Sjogren's) to be Vit. D deficient...severely so I take 5000 units/day. I take 3600mg of Omega 3 Fish Oil, a Multivit/Mineral, a probiotic, and sometimes a natural green powder supplement called Field of Greens.

I am not sure how much difference they have made with the Sjogren's except the Fish Oil has been critical to help manage my mood swings when I am on high doses of steroids. There has been a lot of research done about them in regards to depression, mood swings, anxiety and they definitely help me.I just started the Culturelle and Field of Greens so we shall see!

Candee said...

It's interesting, I remember asking my docs, both rheumy and family doc about the vitamins and supplements..they both looked at me like I had two heads...I asked if I should be careful or concerned about them and they said no..dismissively. What seems to be helping me is calcium 1200mgs, D3 10,000IUS, omega 3/dhea fish oil, folic acid, and before bed magnesium. it helps if I haven't gotten enough fiber in my day.

Unknown said...

I have tried numerous natural methods with my RA. I have worked with a naturopath for years and for a shorter time a acupuncturist who dealt in Chinese medicine. What I found to work the very best was Wobynzyme at really high levels. However, the cost of it finally ended my use. High doses of tumeric in a protein powder early on also gave me some relief. If I had to do it all again, I would definitely follow the same path I did in trying to find natural methods to reduce my RA pain.

Currently I take fish oil, vitamin D3 (I have my levels tested once a year.), occassionally digestive enzymes (I should take these all the time as they help my digestion which seems to correlate with joint pain) and two days ago I started taking Biotin for hair loss. I am also on Enbrel and Arava.

I tried to post on your insurance post (I don't know if it ever went through. It was a good post with lots to think about. Thanks.) but I am very frustrated with the fact that insurance won't cover any alternative medicine. I can guarantee that working with my naturopath has prevented my family memebers from having to see the family physician in years. Her methods are generally simple lifestyle changes that are very preventative, but not covered. Very disappointing to me.

Deb aka AbcsOfra said...

Christine...sometimes I wonder which came first, the chicken or the egg, my ra or my deficiencies in vitamins and such. Of course I have found no research on this topic as that would mean they would have to follow humans without ra in the prospect of them maybe developing ra or an autoimmune disorder. It is a very difficult tight rope that we walk as patients and the longer I have autoimmune disorders the clearer this becomes to me.

Candee...glad to see you commenting and looking forward to following your new blog. Your docs comments are so typically. Either we get dismissed with you shouldn't be experimenting with natural stuff at all or I don't really care. But if they don't care then who do we ask?

Cathy....many of my extended family members are doing the natural path completely including a naturopath. It can get so expensive that I haven't jumped in completely. I hate starting and stopping things based on money. It gets to be soooo frustrating. The medical view in the country has been treat symptoms not the root cause or don't practice being pre-emptive or striking before something goes wrong. Our views here are actually backwards. If we don't put good healthy things into our bodies (free of chemicals, etc.), exercise as our bodies are meant to....inevitably something will break down. Now, I don't mean to say that people will never get ra or cancers or colds but having a strong foundation to build one's life on (a healthy body made from putting healthy things in it and around it), then chances are we will get sick more. But I get sooo tired of fighting traditional thinking. We are already exhausted and tired and fighting verbally with doctors just doesn't play into my plans anymore.

L."Wren" Vandever said...

Excellent post, Deb. I take calcium, Vit. D, folic acid and a prescribed multivitamin each day in addition to Arava, sulfasalazine and plaquenil. It makes quite a handful of pills. On Sunday mornings I add a dose of Fosamax (for osteoporosis)for the week to the others. Like most of us who have RA, I've tried other supplements over the years, hoping they might be the magic cure. But none of them did anything but lighten my wallet.

That's not to say that some supplements may be very beneficial. I believe the key to their efficacy is unique to the individual who takes them, given how RA affects each of us a little differently. That's why, I believe, we'll hear stories about someone's Aunt Mary who took fish oil and tumeric, and who is now pain-free. For Aunt Mary, it worked. For your Cousin Joe, it was the copper bracelet with the tiny magnates embedded in the metal.

I also believe that the placebo effect is real, and that in many cases it DOES provide healing. I don't poo-poo this or put it down: the healing power of our minds is, frankly, amazing. So as far as I'm concerned, three cheers for it, if it can relieve pain and facilitate healing.

I've had acupuncture work on my RA pain, too, but not every time. This is another method of healing that I think hinges strongly on belief. All power to it. I would never counsel anyone to avoid it just because its effect cannot be scientifically proven. There are SO many mysteries in our world. Thank goodness!

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even if their discomfort is outweighed by the potential health benefits that their pet would receive. Omega 3 Salmon Oil 

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